Very often I have a very hard time telling people what to buy Brian for birthdays. He has very limited interests. If he could talk he would ask for:
* a fishing pole (I think G& G St. Clair have called this one!)
* anything Thomas
* anything to do with Cars (the movie)
* anything to do with numbers
* movies
* helicopters & propeller planes
So he'd be completely happy with any of those things but I decided this year to also put together a list of a bunch of items I want for Brian. Mostly learning toys. Some sensory items that we need to return to CDS when he graduates from Early Intervention this fall (weighted blanket, deep pressure vest, etc.) So here it goes:
From Super Duper Publications
* "Can Do" Oral-Motor cards - these cards help him practice different movements of his lips, tongue, and teeth with fun activities- 14.95
* Pressure Brushes- Brian really loves the tactile pressure given by these brushes- set of 3 for 14.95
* Z-Vibe Oral Motor Tool- a mouth massager used to wake up his mouth- 35.00
* Speechercise Music CD- a fun CD with activites to practice mouth movements- 14.95
* Sensory Diet Cards- cards with different activities to address his sensory needs- 19.95
From Different Roads to Learning:
* Soundtracks- Bingo type games to work on auditory processing- he'd love either version- 14.95
* Emotions Language Cards- cards to help him learn about emotions- 9.95
* Small, Medium, Large- puzzles to help him sort and learn about the differences in sizes- 14.95
* People In My Neighborhood- cards to learn about people he meets in the community- 9.95
* Learning to Sequence- exactly as it says :)- 12.95
* Social Sequences at School- 24.95
* Photo Opposites- 15.95
* Jumbo Triangular Colored Pencils- large pencils like these make it easier to use the tripod grasp- 6.95
* What Do I Say? (Appropriate Social Responses)- an interactive book to help him in social situations- 21.95
* What Do I Do? (Appropriate School Behaviors)- an interactive book to help him with situations at school- 21.95
Stuff we need to replace with our own as we have to return ours to CDS:
*A Southpaw Deep Pressure Vest- Bear Hug- Size Small: Brian LOVES his deep pressure vest- it helps him gather himself when we are in new or "scary" situations- he often asks for this on his own
* A weighted blanket- Brian sleeps with his everynight! Preferably one with a soft texture to it as he is sensitive to different textures.
And last category- fun stuff I've been wanting to get for him but just haven't yet:
* An indoor swing for his proprioceptive needs
* A Body Sox- a very fun toy that he enjoys playing with at therapy- it gives him the deep pressure that he just loves! Doesn't need to be the "Body Sox" brand- other body socks made are much cheaper!
* A preschool portable CD player- I know Little Tykes or Fisher Price makes these- he's gone through a few regular ones with his auditory therapy and I think one of these ones made for preschoolers may be a bit more tough
* A resistance tunnel- a tunnel made out of lycra type material that helps with motor planning and body awareness as well as giving him some of that input to the joints when he's pushing against the lycra
So that's it- I didn't mean for it to be so long & overwhelming! Obviously Brian would be completely happy with anything I've mentioned- especially the short list at the top- so anything you decide to get he'll love!
Sunday, April 5, 2009
Autism on Larry King: Transcript
In case you missed the show this weekend, which I missed the end, they have put up a transcript of the entire evening. Was very good reading!
Larry King: Autism & Vaccinations
Larry King: Autism & Vaccinations
Saturday, April 4, 2009
Brian's Journey with Autism
As part of Autism Awareness Month I want to share Brian's journey. From his diagnosis to where he is today.
Brian developed very normally. Actually quite ahead of the curve. He was crawling at 4 1/2 months and walking at nine! He was a MAJOR ham. Loved the camera! He always had this great twinkle in his eyes when he smiled for it. He babbled NONSTOP- I was so happy to hear that babble because my older son had a speech delay and he hadn't babbled very much. Brian would do this funny back & forth babble with everyone and it was so animated- I especially remember my Dad getting a kick out of it and he would sit with him on the couch at six months old and just have this whole "conversation" for half an hour. He loved the Itsy Bitsy Spider and Peek-A-Boo. He loved to follow Corbin around and try to do whatever he was doing. My Dad would always say, "This is the one. He's going to make a difference somehow, I just know it!"
I can't paint all of his babyhood as completely perfect. There were definite little sensory issues- which I noticed as my older son had those too (Corbin was actually just finally diagnosed with sensory integration disorder). He didn't like being outside- running like a maniac inside but outside kind of scared him and he would stay in one spot the whole time. The sun bothered him more than it should as did the texture of the grass. I have this great picture of him eating a sandwich on a picnic balancing on his bottom making sure to hold his bare toes off the ground. Around six months he went through this horrible stage of banging his head on the ground- all the time- so much so he would have a bruise all the time on his forehead. I asked our pediatrician about it and he said all kids do it at some point and he's probably just trying to get attention- I forgot about it as the phase only lasted about four weeks.
Brian was 18 months when his Dad & I split. It was at that time I started to get worried. I realized that words he had, he didn't have anymore. Headbanging started again- this time, much worse. He started pulling out his hair so much so that he had a bald spot on the back of his head. He didn't make eye contact. He lost interest in any toys- only trains now. I noticed he didn't point anymore. He didn't even wave bye-bye anymore. He didn't do the Itsy Bitsy Spider anymore. He wasn't the life of the party anymore- in fact I was too scared to bring him to any parties. At first I wanted to blame all these changes on the very rocky split his father & I had. But deep down I knew it wasn't.
As I mentioned before my older son had already been recieving services- so I didn't even attempt to ask my pediatrician. Instead I just went right to our Early Intervention program and asked for an evaluation. First we did a speech evaluation- basically the evaluation was completely based on my observations as the clinician couldn't get him to do anything- she witnessed a LOT of headbanging that day. The report came back suggesting we do further testing.
Next came Annie, who was our rock during this whole transition (and I still call every now & then even though she's not one of his therapists anymore). She was the one who diagnosed him with autism. I remember her saying, "He doesn't give a lot back, does he?" I know, that from the minute I asked for that speech evaluation that autism was in the back of my head- but it was then that I just knew she was going to tell me that was what he had. After she had done several assessments on him she asked me if I had any ideas on what I thought. I said, I remember it clear as day, "I don't want to say it. I think it's autism- but I don't want to say it and make it real." She kindly gave the label PDD-NOS, mostly to try to ease myself into the world- as she even admitted a year later when I asked her why she gave him that label when he clearly had classic autism. Brian was two and three months old when he recieved the diagnosis. About a year later he recieved the actual title of "autism" when we went for a second opinion.
What followed was a whirlwind of therapies, tons of reading on my part, and a lot of time grieving. I know I still had my beautiful boy- but he had disapeared into himself. I KNEW something had happened to him. How in the world does he go from the social advanced little boy he was to the boy who now didn't even notice if I came into the room. I had a really hard time explaining it to family and friends because unfortunately the only autism they knew was the "Rain Man" or they had an image of a total shut-off child. Brian did cuddle- of course it was mostly for the deep pressure and the skin-to-skin contact he craved. He did sometimes look at you and give you a smile that was just for you. He was a happy boy. Those things didn't seem to them like traits of autism. Of course, we all learned and grew together, and they are all now his best advocates.
Five months later I started Brian on the gluten-free diet. I had read a lot of books, had called other parents I knew who were doing the diet, and had scheduled an appointment with a DAN! doctor. Within weeks of being on the diet Brian's self-injurous behaviors just stopped. He went from banging his head 10-20 times a day, hitting his face 5 times a day, a bite to his arm here and there, and pulling his own hair & eyelashes throughout the day to nothing. He started imitating movements. He would do Simon Says type of games- it was amazing!
Getting ready for our DAN! appointment I asked his pediatrician for a copy of his immunization records. Before doing so, I had filled out a twenty page information pack on Brian and had sent it in. I brought the immunization records with me and sat down with the DAN! doctor and put together the record with what I had filled out and it basically brought me to tears. I realized that that first incident of headbanging at six months was when he recieved the DTP shot (three live viruses in one) and the Prevnar shot. Then right before his regression at 18 months he recieved the DTP again, the MMR (another triple), and the chicken pox vaccine. SEVEN vaccinations at once.
Brian had NEVER reacted to immunizations well. I remember after the shots at two months we were on the ferry going home (we lived on the island at the time) and he was screaming his head off. He was so upset that I was crying- I had terrible thoughts running through my head of all the things that could be wrong with him to make him cry like that. I had never heard anything like it. I took him right to the medical center on the island when we got off the boat and I was told he was having a normal reaction to immunizations. After that, every immunization was followed with a couple days of crying, tons of sleep, crankiness, and fevers. I didn't think anything of them since my trusted doctors had told me not to worry. Looking back, I can't believe I didn't see what was happening.
We've continued to do ABA, speech, auditory, and occupational therapy with Brian. He has been on the GFCF diet for quite a while and takes a couple different supplements. Brian is slowly coming back to us but he still has a LONG ways to go. I know that his immunizations had something to do with his autism. I strongly believe that perhaps his autism does have a genetic connection but environmental factors & immunizations were the straw that broke the camel's back. I WATCHED him change, right in front of my eyes. I will continue to fight for him to reach his full potential and for other's to realize there is hope with this diagnosis.
Brian developed very normally. Actually quite ahead of the curve. He was crawling at 4 1/2 months and walking at nine! He was a MAJOR ham. Loved the camera! He always had this great twinkle in his eyes when he smiled for it. He babbled NONSTOP- I was so happy to hear that babble because my older son had a speech delay and he hadn't babbled very much. Brian would do this funny back & forth babble with everyone and it was so animated- I especially remember my Dad getting a kick out of it and he would sit with him on the couch at six months old and just have this whole "conversation" for half an hour. He loved the Itsy Bitsy Spider and Peek-A-Boo. He loved to follow Corbin around and try to do whatever he was doing. My Dad would always say, "This is the one. He's going to make a difference somehow, I just know it!"
I can't paint all of his babyhood as completely perfect. There were definite little sensory issues- which I noticed as my older son had those too (Corbin was actually just finally diagnosed with sensory integration disorder). He didn't like being outside- running like a maniac inside but outside kind of scared him and he would stay in one spot the whole time. The sun bothered him more than it should as did the texture of the grass. I have this great picture of him eating a sandwich on a picnic balancing on his bottom making sure to hold his bare toes off the ground. Around six months he went through this horrible stage of banging his head on the ground- all the time- so much so he would have a bruise all the time on his forehead. I asked our pediatrician about it and he said all kids do it at some point and he's probably just trying to get attention- I forgot about it as the phase only lasted about four weeks.
Brian was 18 months when his Dad & I split. It was at that time I started to get worried. I realized that words he had, he didn't have anymore. Headbanging started again- this time, much worse. He started pulling out his hair so much so that he had a bald spot on the back of his head. He didn't make eye contact. He lost interest in any toys- only trains now. I noticed he didn't point anymore. He didn't even wave bye-bye anymore. He didn't do the Itsy Bitsy Spider anymore. He wasn't the life of the party anymore- in fact I was too scared to bring him to any parties. At first I wanted to blame all these changes on the very rocky split his father & I had. But deep down I knew it wasn't.
As I mentioned before my older son had already been recieving services- so I didn't even attempt to ask my pediatrician. Instead I just went right to our Early Intervention program and asked for an evaluation. First we did a speech evaluation- basically the evaluation was completely based on my observations as the clinician couldn't get him to do anything- she witnessed a LOT of headbanging that day. The report came back suggesting we do further testing.
Next came Annie, who was our rock during this whole transition (and I still call every now & then even though she's not one of his therapists anymore). She was the one who diagnosed him with autism. I remember her saying, "He doesn't give a lot back, does he?" I know, that from the minute I asked for that speech evaluation that autism was in the back of my head- but it was then that I just knew she was going to tell me that was what he had. After she had done several assessments on him she asked me if I had any ideas on what I thought. I said, I remember it clear as day, "I don't want to say it. I think it's autism- but I don't want to say it and make it real." She kindly gave the label PDD-NOS, mostly to try to ease myself into the world- as she even admitted a year later when I asked her why she gave him that label when he clearly had classic autism. Brian was two and three months old when he recieved the diagnosis. About a year later he recieved the actual title of "autism" when we went for a second opinion.
What followed was a whirlwind of therapies, tons of reading on my part, and a lot of time grieving. I know I still had my beautiful boy- but he had disapeared into himself. I KNEW something had happened to him. How in the world does he go from the social advanced little boy he was to the boy who now didn't even notice if I came into the room. I had a really hard time explaining it to family and friends because unfortunately the only autism they knew was the "Rain Man" or they had an image of a total shut-off child. Brian did cuddle- of course it was mostly for the deep pressure and the skin-to-skin contact he craved. He did sometimes look at you and give you a smile that was just for you. He was a happy boy. Those things didn't seem to them like traits of autism. Of course, we all learned and grew together, and they are all now his best advocates.
Five months later I started Brian on the gluten-free diet. I had read a lot of books, had called other parents I knew who were doing the diet, and had scheduled an appointment with a DAN! doctor. Within weeks of being on the diet Brian's self-injurous behaviors just stopped. He went from banging his head 10-20 times a day, hitting his face 5 times a day, a bite to his arm here and there, and pulling his own hair & eyelashes throughout the day to nothing. He started imitating movements. He would do Simon Says type of games- it was amazing!
Getting ready for our DAN! appointment I asked his pediatrician for a copy of his immunization records. Before doing so, I had filled out a twenty page information pack on Brian and had sent it in. I brought the immunization records with me and sat down with the DAN! doctor and put together the record with what I had filled out and it basically brought me to tears. I realized that that first incident of headbanging at six months was when he recieved the DTP shot (three live viruses in one) and the Prevnar shot. Then right before his regression at 18 months he recieved the DTP again, the MMR (another triple), and the chicken pox vaccine. SEVEN vaccinations at once.
Brian had NEVER reacted to immunizations well. I remember after the shots at two months we were on the ferry going home (we lived on the island at the time) and he was screaming his head off. He was so upset that I was crying- I had terrible thoughts running through my head of all the things that could be wrong with him to make him cry like that. I had never heard anything like it. I took him right to the medical center on the island when we got off the boat and I was told he was having a normal reaction to immunizations. After that, every immunization was followed with a couple days of crying, tons of sleep, crankiness, and fevers. I didn't think anything of them since my trusted doctors had told me not to worry. Looking back, I can't believe I didn't see what was happening.
We've continued to do ABA, speech, auditory, and occupational therapy with Brian. He has been on the GFCF diet for quite a while and takes a couple different supplements. Brian is slowly coming back to us but he still has a LONG ways to go. I know that his immunizations had something to do with his autism. I strongly believe that perhaps his autism does have a genetic connection but environmental factors & immunizations were the straw that broke the camel's back. I WATCHED him change, right in front of my eyes. I will continue to fight for him to reach his full potential and for other's to realize there is hope with this diagnosis.
Friday, April 3, 2009
A Very Moving Video
Autism Yesterday- a 26-minute documentary on five families with recovered children. The original post is over at www.ageofautism.com .
"AUTISM YESTERDAY" Autism is Reversible from JB Handley on Vimeo.
"AUTISM YESTERDAY" Autism is Reversible from JB Handley on Vimeo.
Check out Larry King tonight! Must see TV!
Jenny McCarthy will be on Larry King on CNN again tonight! Joining her will be Jim Carrey, Dr. Kartzinel, JB Handley & Stan Kurtz. They will be discussing autism, debating against a mainstream doctor, and we'll get to meet a family with a recovered child.
Check out JB's blog on Larry King here-
http://larrykinglive.blogs.cnn.com/2009/04/03/lkl-blog-exclusive-autism-is-preventable-and-reversible/
Check out JB's blog on Larry King here-
http://larrykinglive.blogs.cnn.com/2009/04/03/lkl-blog-exclusive-autism-is-preventable-and-reversible/
Thursday, April 2, 2009
Awareness Isn't Enough Anymore
Today is World Autism Day and the month of April is Autism Awareness Month. I love this time of year when so much attention is given to autism yet at this point of time in our lives I am starting to feel that awareness is already here. Nowadays, everyone does know what autism is, most everybody knows of someone with autism. In my line of work we are seeing more and more kids being diagnosed with autism. Local public schools in this area are finally making programs specifically geared for children with autism.
Autism awareness was good when in the 70s it was 1 in 10,000. And even good in the early 90s when it was 1 in 250. Maybe good enough for the 1 in 150 number that everyone hears now, which was actually the number they came up with a couple years ago. The Department of Defense is claiming a 1 in 88 children among their dependents. The UK just released their newest census- 1 in 60 children. 1 in 34 boys.
Just take a minute to let that soak in. 1 in 60 children. I know in this "small town" I live in there are an estimated TEN kids going into the kindergarten class next year with autism. 10 out of about 60-75 children altogether. In the past professionals have tried to say that the rise in numbers were due to better diagnostics. Well the diagnostics aren't changing now, yet the numbers keep climbing. You do the math.
With numbers like these we need more than awareness, we need big time activism and a lot of action. We have an epidemic on our hands. How long do we have to wait? Until it's 1 in 50? 1 in 25? 1 in 10?
Autism can be reversible. We have heard amazing stories of children making their way out of the world of autism. I have watched my own son, not recover, but make amazing strides. Parents are NOT lying about the gains their children make, they are not lying about the regression they saw after vaccinations, they are not lying about the biomedical approaches they use. Why would they lie?
As the month of April carries on you will be seeing a lot of links here on my blog for you to check out yourselves. Please make sure to visit often!
Autism awareness was good when in the 70s it was 1 in 10,000. And even good in the early 90s when it was 1 in 250. Maybe good enough for the 1 in 150 number that everyone hears now, which was actually the number they came up with a couple years ago. The Department of Defense is claiming a 1 in 88 children among their dependents. The UK just released their newest census- 1 in 60 children. 1 in 34 boys.
Just take a minute to let that soak in. 1 in 60 children. I know in this "small town" I live in there are an estimated TEN kids going into the kindergarten class next year with autism. 10 out of about 60-75 children altogether. In the past professionals have tried to say that the rise in numbers were due to better diagnostics. Well the diagnostics aren't changing now, yet the numbers keep climbing. You do the math.
With numbers like these we need more than awareness, we need big time activism and a lot of action. We have an epidemic on our hands. How long do we have to wait? Until it's 1 in 50? 1 in 25? 1 in 10?
Autism can be reversible. We have heard amazing stories of children making their way out of the world of autism. I have watched my own son, not recover, but make amazing strides. Parents are NOT lying about the gains their children make, they are not lying about the regression they saw after vaccinations, they are not lying about the biomedical approaches they use. Why would they lie?
As the month of April carries on you will be seeing a lot of links here on my blog for you to check out yourselves. Please make sure to visit often!
Wednesday, April 1, 2009
The Glue Incident
Climbing out from under my rock with a slightly humorous story that might give everyone a little giggle as they form the mental imagery.
This past weekend it was just Brian and I at home, all weekend, all by ourselves. That has never happened before. It was amazing having all that time to devote just to him. We worked on some toiletry issues and made some big gains, I feel, in that area.
Saturday night he went to bed at his normal time and I rented a "chick flick" taking full advantage of Josh not being home. After the movie ended I dragged my tired self off the couch and headed up the stairs, I heard Brian talking, but usually when he wakes up at night he just stays in bed and talks to himself.
Brian walked out of his bedroom, completely naked, with a big smile on his face as soon as I stepped off that last step. I sighed, "Brian did you pee your bed?" He's been doing SO well since we got his new big boy bed- not even wearing pull-ups at night anymore! I walked past him and did my typical rub of the head to tell him I still love him when I felt that all of his hair on his head was hard as a rock. I went into his room and felt the bed in the darkness only to be met with some kind of goo all over my hand. I ran over to his lamp, turned it on and simultaneously cried, "Brian, what did you get into??"
I turned around to find that he had somehow managed to get a bottle of glue off of his therapy shelves and had it EVERYWHERE. All over his Dynavox, his table, his chairs, on every single layer of bedding, his pajamas, his body- EVERYWHERE. I wasn't even aware a bottle of glue held that much in it! I was just in shock, while Brian hid around the corner of his doorway with his hands covering his ears.
I stripped his bed, took the Dynavox out of his room and told him to get in bed- he started running towards my bedroom and I said, "Oh no buddy!! In your bed now!" He started crying, ran on to his bed, and pulled the clean blankets over his head. I started to march out of his room but his sad cries pulled me back in. They weren't the angry cries that we use to get for everything- these were different. Crying, not because he's mad I spoiled the fun, but crying because he's upset I was mad at him. I sat on his bed and rubbed his back. He sat up with tears still running down his face and he pulled me down to lie next to him. A few seconds later as I was wiping away his tears, I asked, "Do you want to sleep with Mama?"
So that's how the story goes. The story of Brian pulling off probably one of his biggest, or at least messiest, escapades and still getting what he wanted all along- to sleep with his Mommy. Oh and Mommy did regret it in the morning after spending a full night with a snoring, rolling around, cuddly boy.
This past weekend it was just Brian and I at home, all weekend, all by ourselves. That has never happened before. It was amazing having all that time to devote just to him. We worked on some toiletry issues and made some big gains, I feel, in that area.
Saturday night he went to bed at his normal time and I rented a "chick flick" taking full advantage of Josh not being home. After the movie ended I dragged my tired self off the couch and headed up the stairs, I heard Brian talking, but usually when he wakes up at night he just stays in bed and talks to himself.
Brian walked out of his bedroom, completely naked, with a big smile on his face as soon as I stepped off that last step. I sighed, "Brian did you pee your bed?" He's been doing SO well since we got his new big boy bed- not even wearing pull-ups at night anymore! I walked past him and did my typical rub of the head to tell him I still love him when I felt that all of his hair on his head was hard as a rock. I went into his room and felt the bed in the darkness only to be met with some kind of goo all over my hand. I ran over to his lamp, turned it on and simultaneously cried, "Brian, what did you get into??"
I turned around to find that he had somehow managed to get a bottle of glue off of his therapy shelves and had it EVERYWHERE. All over his Dynavox, his table, his chairs, on every single layer of bedding, his pajamas, his body- EVERYWHERE. I wasn't even aware a bottle of glue held that much in it! I was just in shock, while Brian hid around the corner of his doorway with his hands covering his ears.
I stripped his bed, took the Dynavox out of his room and told him to get in bed- he started running towards my bedroom and I said, "Oh no buddy!! In your bed now!" He started crying, ran on to his bed, and pulled the clean blankets over his head. I started to march out of his room but his sad cries pulled me back in. They weren't the angry cries that we use to get for everything- these were different. Crying, not because he's mad I spoiled the fun, but crying because he's upset I was mad at him. I sat on his bed and rubbed his back. He sat up with tears still running down his face and he pulled me down to lie next to him. A few seconds later as I was wiping away his tears, I asked, "Do you want to sleep with Mama?"
So that's how the story goes. The story of Brian pulling off probably one of his biggest, or at least messiest, escapades and still getting what he wanted all along- to sleep with his Mommy. Oh and Mommy did regret it in the morning after spending a full night with a snoring, rolling around, cuddly boy.
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